Told ya already Tyson. Get into the ER . At least they'll do an O2 saturation test on you. You're light headed when you're exercising... hmmm. could it be you're not getting the Oxygen that your body needs? You're an athlete, you should know this young fella.

Is it possible for me to go at the age of 17 by myself? I dont have anyone that could go with me..

I just dont know if im being a baby about it all, or if its happening.

I'm glad you asked this question. I've never experienced a crisis either and don't know what to expect. Since being diagnosed I've just had ocular.

I too have been dealing with some breathing issues the past few days. Swallowing and chewing are not affected. Sometimes it just seems to take an "effort" to take a deep breath. I wasn't sure what it was -- my breathing or maybe acid reflux. When I would drink milk or a glass of water I could force myself to burp and that seemed to help temporarily. My double vision has been so bad for almost 2 weeks now that I almost feel like a blind person with my husband leading me around when we're outside familiar territory. Neuro has been increasing my Prednisone by 5mg (from 0 to 10mg now) but no effect. I'm going to call first thing tomorrow morning. When I was first diagnosed back in July he started me at 40mg and it knock out the double vision and droopy eyelid the first day. Guess he didn't want to start me that high again. I'm also taking 60mg of Mestinon 3 times a day.

So far today things are good breathing-wise, but it seems to come and go. I'm not tired, no muscle weakness, just the blasted double vision.

Happy Turkey Day everybody.

Also, many of the times when I get up out of a chair
or while laying and then getting up I get very lightheaded as tho I am going to passout. My head gets all black. But only for a few seconds.

Im glad i can too help you with understanding this idea of crisis. I dont really understand what exactly it is. Im sorry to hear about your double vision. I cant really relate that much as i rarely get that. But i truely does suck whenever I get it.

Were somewhat in the same situation. I have never had a crisis, though i am always weak. Some days I wake up okay, but then some days, i wake up very weak and i can tell its a bad day.
Im just at a point of not knowing if im going through a crisis or not, and whether i should amke a deal of this.

I get lightheaded when getting up sometimes, my limbs are very tired, and my breathing is very shallow, i know what you mean about the shallow breath thing. Usually i take very shallow breaths, but it takes an effort to do a deep breath.

I wish i could go buy a pulsox to see my oxygen level without going to the hospital... i dont know where to go to buy one..

Im just taking it easy today, eating and sleeping. sounds like a great day...hah.

hope your doing well.

Ditto on what Brian said. Sue too. Heck, everyone really. From every single thing you are saying, you need to go in. Listen to those of us who have been on the edge of a crisis and not had one and then who have had one. Even if I don't think I'm going to go into a crisis and am having an "exacerbation," I still go in for breathing tests and to see my pulmonologist. And leave a message with my neuro.

If you are 17 and you need medical care, it doesn't matter if you "take yourself" or dial 911. They are obligated to help you, no matter what age you are!!!

If you don't have a good pulmonologist, then get one. ASAP. You can also ask that they write a prescription for an oximeter. They may not do it but you can ask. There are far less expensive ones on Amazon.com but you need to really read the reviews - and the return policies.

Every single thing you are describing is worrisome. And the fact you are lightheaded at times really worries me. It could be MG, sure. It could be other things but it doesn't "matter" because you need help to figure it out. A lack of oxygen is VERY hard on the brain and heart (and kidneys). Has anyone even checked your blood pressure lately? You can check your pulse. Does it go skyrocketing when you feel lightheaded? When the body can't get enough oxygen, the heart beats faster to attempt to get that done.

An MG crisis can come on so slowly, that you don't even realize you are getting worse. If you got weaker all of a sudden, you would notice it better, right? But every single symptom you are describing sounds like you are very close to a crisis. That's when you want to go in - BEFORE you are in a crisis. Once you are in the middle of a crisis, you not only need immediate help but it takes so much longer to recover. So it doesn't matter if you don't know what one is like. You know that the symptoms you are having right now are EXTREME and you need help.

I'm sorry you don't have the support you truly deserve. That's rough. But since they have taken on the responsibility of housing you, they need to step it up and take better care.

Why aren't you on Mestinon? That's the very least you can do to help yourself. Talk to your neuro about dosing/frequency (how much you take at a time and how often/how many hours in between).

Don't feel stupid about going in to the ER. That's their JOB, to assess your health when you can't. Okay?!!!! Just do it. No amount of rest will help if you are headed towards a crisis. I tried before mine and it didn't work.

Let us know how you are doing.

Annie

You don't only go to an ER only when you are IN a crisis. In fact, most people who get to that point had "clues" like you are having and ignored them OR they just got that bad that quickly.

You go to an ER when you are getting worse. It's preferable that you go BEFORE you are in a crisis.

If you get worse, call your neuro. If you are as bad as you are, GO IN and the ER staff can call your neuro for you.

1st. Thank you for all of your very useful information. It truely is very valuable.

I understand your concern for me going into a crisis, i just wish i knew what it exactly felt like, here is whats happening, and could you please tell me what i should do, even though I know youve already said go to the ER. Heres whats really happening.

1. Yesterday I went to my secondary neuro at UNC- chapel hill, to get more plasmapheresis ordered. He checked me out, said i was okay. asked if i was having trouble swallowing/breathing. I said breathing, and at that point i had hardly had any swallowing troubles, maybe 2 or 3, where i have to focus very hard to get the food down my throat, like my muscles are gone. But only very rare occasions.

Then When i came home that night, around 9 oclock, swallowing my own saliva started becoming a chore, and I sort of had to focus, and felt like something was stuck in my throat, and it was a very odd feeling. My breathing was also very shallow, and i told myself i would jst go to sleep (right after I posted that last post on here) and so i sat on my bed, to get my cloths off, then when i woke up at 3 am, i was laying on my bed, with no recollection of how i fell asleep, so i am assuming i passed out in a way.

Today, i woke up at 9, was dizzy when getting out of bed, went and got breakfast, coming up the stairs my legs started to hurt, or be very tired, and my heart was racing quite well.

and Being thanksgiving day i wanted to be downstairs with family, though i had to come up and just got up from a 3 hour nap, and a few minutes ago when eating chicken, not able to stand very long, i sat down, took a bite and almost started to choke on it. but i forcred it down.

But right, now, i feel fine. Just tired, but not really shallow breathing, no dizzyness, though i am lying down.

Throughout the past week ive felt pretty well, and been able to go up the stairs well, and everything, do yoga.

i guess im just stressing that sometimes, im GREAT, then horrible and feel like jello.

Is that a sign of a crisis upcoming?


Thanks for all your awesome help.

I have tried mestinon, though it only makes me worse. My neuro said it works on some people and then doesnt work on some others. I tried the highest dose the other day, and collapsed onto my bed, and slept for 14 hours. It made me much more tired..

thanks again for caring and giving me valuable info.

It can take awhile to figure all this out!!!

First, You should not go directly to a "high" dose with Mestinon. Since you are being seen at UNC, I'm shocked they didn't go over this with you. You should start at lower doses, like 30 mg. and SLOWLY work your way up. You can get weaker with too much Mestinon. So that may be why you think it's making you worse. More is not better with Mestinon. It's a balance between amount and how many times a day AND when you take what amount (i.e., like more when you are out doing things or later in the day when you get worse). A steady dose throughout the day is best. My neuro, who is amazing, says to only take 10 mg. more when out. It might be more than that with you. You should discuss this specifically with your neuro, and work out a sensible dosing schedule.

Neurologists do neurology. Pulmonologists do pulmonology. That may sound simple but many MG patients still do not go see a pulmonologist when their breathing is worse. Pulmonologists are the only ones who can assess your breathing!!! They can do specific breathing tests (MIP and MEP) that can show how bad you are. If bad enough, they can do an arterial blood gas. And oximetry. When you have a crisis, it's both pulmonology and neurology who handle it. You can't tell by looking at an MG patient - which is what your neuro did - to see if they are breathing well or not.

The most telling thing with your symptoms right now is how QUICKLY you go from okay to bad. That's a HUGE warning sign.

Let's say the scale of MG is from 1 to 10 (are any of you at a zero?!!), 10 being a crisis. And it's not a slowly getting worse scale, it's more like a Richter scale (earthquakes), where things get exponentially worse the higher you go. Okay?

When I'm doing okay, I won't go from 2 to 8, for example. I may go from 2 to 4 or 5. Then, when I rest, I go back to 2 or 3 but it can take a day or two.

You sound like you are going from 4 to 8, verging on a 9!!! That's why you need help. Because you don't really know when 8 will turn into 10. The fact that you're napping so long tells me your body is putting you to sleep because it needs to rest so badly. Not from being tired but from weakness.

I know you like to stay fit but YOGA right now?!!! That's simply silly. Yoga takes sustained poses, which can make MG much worse. You need to stop that until next Monday, okay?

Finally, yeah, a crisis is headed your way. I honestly believe that, if you don't slow down and get some real help. Don't know how many ways I can say this!! It's like you're waiting for someone to say, "Naw, you're fine." You're NOT fine.

Dr. Howard should be doing a better job than this, since he's one of the best neuros around!!!! I don't know if you've seen him or if he is your neuro but this is silly. Sometimes neuros don't cover all the "what if's" or "how to's" of MG. And this is what happens. Damn.

Annie

Bravo Annie. Well said.

Tyson, please understand we're trying to help you grasp how important it is to get physician assistance now. You did this when you first had your thymectomy too .... you are looking hard for someone to tell you it is OK for you to push yourself but given what you've told us about yourself it is NOT. You are going to crash and crash hard. Honestly, this is from someone who ignored the signs a bit more than a year ago and landed in hospital for a month. It is new to you, it was new to me two years ago now. I'm *significantly* better now but it took a lot of learning and getting used to my body again. A lot of acceptance of new limitations.

A month in hospital is not worth the "awww, I'm being a wimp and it isn't really that bad". I've paid that price and hope you won't have to because I don't want to see anybody to have to.

Yes I understand you guys are trying to help, and i love that.
Im getting closer to going to the ER, trust me, i just want to make one more thing clear, RIGHT NOW, im fine. Im sitting in bed, my breathing is hardly shallow, its like usual. But when going up the stairs, my pulse did start going faster.

So even though i feel okay while sitting in bed, and am able to go up the stairs without having to stop or anything, i should still go?

I know im being stubborn, but i havent learned the hardway yet, and thats how i learn.